OMF Newsletter – October 2016

October 10, 2016

OMF Receives $260,000 for ME/CFS Research

We are thrilled to announce that we just received two very generous gifts totaling $260,000 ($160K and $100K) from two extremely dedicated families adding to our tremendous strategic donor alliance working together for a cure.

These generous donations allow us to expand the OMF End ME/CFS project with novel and systematic approaches leading towards a better understanding of this devastating disease and towards our top priority, to find effective treatments.

We also thank all of our generous donors from 27 different countries that continue to keep us moving ahead to find a cure.

NIH Director Francis Collins Responds

Due to exceptional outreach from advocates around the United States, 55 members of Congress signed a letter urging the National Institutes of Health (NIH) to increase funding for ME/CFS research. NIH currently spends approximately $2 per patient with ME/CFS compared to $255 per patient with multiple sclerosis and $2,482 per patient with HIV/AIDS.

Janet Dafoe helped to bring the ME/CFS community together to work with Congresswoman Anna Eshoo and raised our voices. There was a loud outcry from patients to support this effort and we all felt it was a positive step forward.

This week, Congresswoman Eshoo shared Director Francis Collins’ response to the 55 Congressional members with Janet. We encourage the US patient community to continue pressuring NIH to step up to the plate and help ME/CFS patients with increasing funding!

OMF Awarded Top-Rated Charity for 2016

With your help we did it! OMF has been honored with one of the first Top-Rated Awards of 2016 from GreatNonprofits!

Our supporters wrote wonderful reviews including statements like, “The Open Medicine Foundation has been for me a pillar of HOPE” and “They have kept me informed almost daily of discoveries and advancements being made through social media and by newsletters.”

Your reviews inspire us and inform the community of the value of our work. We appreciate all of your contributions and look forward to continuing to work together to help patients around the globe! Please feel free to add your review of OMF, too.

We Were There! OMF Spoke Up at #MILLIONSMISSING

OMF leaders Dr. Ron Davis, Linda Tannenbaum and Janet Dafoe, together with Ashley Davis, all took center stage at the Sept. 27th Millions Missing event in San Francisco, CA.

During his speech, Dr. Davis gave a research update and shared that his team has a new nano-fabricated instrument that measures cellular properties in blood. They can now distinguish healthy blood from blood from a patient with ME/CFS. This may be used for an assay for testing drugs for ME/CFS treatment. If this proves to work, they will be able to test every drug that has ever been approved by the FDA for anything, because they have samples of every one of them in their freezer. The hope this engendered in those gathered was palpable.

In her speech, Janet listed her heroes: her family, as well as doctors and scientists who have helped transform the field, and made pleas for transforming the CDC and NIH to “hero” status.

She concluded by speaking directly to Francis Collins, Director of NIH, about the promises he has made directly to her husband, Ron Davis. She reminded him that he had told Ron that we would be pleased by NIH’s new initiatives for funding research. She told him, “Francis, we aren’t pleased yet!”

Linda spoke about the need to move research forward to fast-track answers. Proudly, the day was live-streamed on our twitter feed. The speeches are now available on our YouTube channel.

How Can YOU Make A Difference?

People ask us all the time, how can I help? Sometimes they add, “but I don’t have any money.” We get it. Regardless of your financial means, you can personally help support OMF! We are one team working together for a common goal. Get involved today!

Here are just a few ways you can get involved from anywhere in the world.

Become a Social Media Ambassador. Help us spread our messages through social media. Sharing messages, creating messages with our hashtags, getting the word out – helps to raise awarenss and increases fundraising. #EndMECFS #OMFnm Contact Marilyn for ideas and more information.

Join TEAM OMF by hosting a Team OMFevent – Have a bake sale at work or your place of worship. Host a cocktail party on your patio. Be creative, make it simple, and have fun! Invite your family, friends and colleagues to your Team OMF event, educate them about ME/CFS and ask them to make a donation. Everything you need to know about planning an event is at your finger tips. Every gift – large and small – helps move research forward.

International Associatiation CFS/ME Bienniel Conference

We are excited to share that Scientific Advisory Board Director, Dr. Ron Davis and member, Dr. David Bell, specialist in pediatric ME/CFS, will be at the IACFS conference together with Linda Tannenbaum, CEO, and Marilyn Simon-Gersuk, Director of Communications and Development. Please stop by the table, introduce yourself, and get to know us.

We look forward to reconnecting with old and meeting new friends.

Dueling Pianos: A Night Out For a Cure

OMF and NIDA friends and family celebrated a fantastic, fun evening of dueling pianos, dancing, singing and dinner to raise funds for ME/CFS research and education.

This event, held in Los Angeles on Oct 6th, was generously underwritten by Deluxe, Dolby, Vision Media Management, Vista Group and NIDA so that 100% of all ticket sales and funds donated at the event went to support OMF’s research and education programs.

The evening netted over $30,000. Thank you to everyone who attended and to our local volunteers who helped to ensure everyone had a great time. We will definitely do this again next year. If you would like to host one of these fun events, contact us and we will help you plan one in your neighborhood!

Add Your Voice to Friday Stories

Friday Stories is your place to share your own personal story – patient, parent, child, or caregiver. Please share your personal journey as we work together to end ME/CFS and other chronic complex diseases.

Your personal story helps others who are going through similar medical issues realize that they are not alone or forgotten while empowering you.

Stories are reassuring and let people know it’s okay to talk about their illness and personal experience and to know that others are listening.

Sharing your story is empowering and helpful for others to understand they are not alone.

Our Mission:

To support collaborative medical research to find effective treatments and diagnostic markers.

To communicate, engage and inform the patient community.

To help drive & support scientific meetings for continued global collaboration.

A Word from our CEO/President:

With tremendous U.S. and International support, we are grateful to all of our study participants, donors, followers, bloggers and social media fans as well as our boards and volunteers that continue to help keep this ground-breaking research moving forward and communication flowing.

We are all in this together as a community; #MEAction and their #MillionsMissing campaign was a huge success all around the world in 25 cities. Thank you to the #MEAction team and all the volunteers who made that happen.

Thank you all for reading our newsletter and being a part of the solution.